Karen Martin

I believe that everyone has “something” that affects them to some degree or other.  We might not know they are dealing with a broken marriage or depression or cancer or any number of other things.  The automatic response to “How are you?” is “Fine, thanks.  And how are you?”  We really don’t know about most other people we meet in life are dea…[Read more]

Marianne, in regards to your BP being erratic, perhaps it was your anxiety over doing the 6 minute walk test that raised it so much.  I think most people have heard of “white coat syndrome” where you are reacting to being seen by the doctor, worrying about what they will tell you about your diagnosis or having some sort of test done.   You mi…[Read more]

Jane, when you get into bed with those awful chills, don’t neglect warm socks.  They make all the difference for me, even warming the foot of the bed beforehand.

When I first read this thread, I found it interesting but didn’t think it was a problem for me.  Recently, I realized that I am so accustomed to turning a fan on and off to keep me comfortable that  I was just not paying attention!  I also take Esbriet, but this problem pre-dates that.  I am fortunate enough not to have horribly serious ext…[Read more]

Char, I hope you get some relief for your dry hands.  Glad maybe I was of some help.

When I use foam soaps, my hands dry out more.  Wondering what sort of soaps you have been using, Char.  The hand sanitizer also doesn’t help.   Just as using Vaseline on your feet and then sleeping with socks on at night to soften your heels,  coating your hands and wearing gloves (or even socks!) will give you a boost.   Neutrogena makes a gel ca…[Read more]

Christie, I think perhaps fear is also a factor for me.  When I feel myself more often SOB, I wonder if it is my “fault” for doing/not doing something or if it is a sign that things are deteriorating.  Then, like an ostrich, I just want to stick my head in the sand!

I like Conni’s comment about doing anything other than breathing exercises, e…[Read more]

I find routines that ask you to inhale for a “deep breath” make me anxious.  I have trouble doing that.  I also have trouble holding it for extended periods at a time.  I don’t know if this is just my anxiety about being able to perform these tasks or actually my breathing ability (or lack of).  I also found the harmonica exercise interesting and…[Read more]

Hey, Yolanda.  Everyone is different in the way they react to meds.  I would talk to the doctor about it.  Mine told me we could be flexible about the dosage, so I suspect that may not be a problem.  I recently read about a study that said redheads usually need more meds, especially when dealing with pain.  Both my late husband and my gran…[Read more]

Yolanda, I know how the indigestion can be a problem.  I was told to be sure to eat enough protein before taking my Esbriet.  It was suggested that I eat a bit, take one tablet, eat some more, take another and so forth.  I did find that being sure to get protein in my diet helped with the problem.  You can usually call a number for the pro…[Read more]

William, that is a great post!!  Thank you for the up-to-date information.  You are absolutely right that another study needs to be done, or at least doctors need to see this!  I am sure you made many people feel LOADS better with this information.  Have a great day, everyone.  🙂

I had never read anything like this.  Due to the fact that it is supposed to be very quickly absorbed into your system, maybe most of what is excreted is not necessary for it to work?  To be perfectly honest,  I really don’t care how it works, only that it seems to.  Sometimes I revert to that old “ignorance is bliss” state.  🙂

Hey Pete.  My doses are usually between 9:00am and 6:30pm.  I have always done it this way.  Be sure you have protein in your meal, too.  I hope that helps.

Pete, if you are taking three doses of Esbriet a day, why not time them to go along with your meals?  That way you don’t need to think about taking them on an empty stomach, which is not recommended, and you don’t need to be eating just before going to bed.  I know I was told very seriously that you need to have food in combination with Esbriet, s…[Read more]

I am very glad Pam asked the question and got Char’s response!  I have also heard that 3-5 year prediction and worried about it.  Of course, when you consider almost any disease and think about the ongoing progress in treatments, that is likely the case almost every time.  It is very reassuring to hear you “say” this right out loud here.  :)…[Read more]

Prati, if what you are describing is like a muscle cramp in your ribs, I have been having those for the last three plus years and no one can figure it out.  I also have hypothyroid and the doctor told me it might be linked to that, but it has only really been active since the IPF diagnosis, but even before I started taking Esbriet.  It is a real w…[Read more]

Hey, Charlene.  Sorry to hear about your problems.  I have dizziness from time to time also.  In some cases it can be caused by poor circulation or meds, but you can also have tiny crystals in the inner ear that cause movement in the fluid in your inner ear that makes you dizzy.  There are exercises you can do to help with that if you want to do…[Read more]

Mark, I am so sorry to hear you and your wife both dealt with COVID. I am glad to hear things are better now. Don’t beat yourself up too much for letting your guard down. I keep hearing about so many people catching this who I suspect have done their very best. There is still so much unknown about the virus that I think it is a wonder not more…[Read more]

Thank you, Char. I am not perfect in keeping this resolution. I have plenty of days when I feel the usual stresses of life, but I do try not to let them run my life as much as they used to do. I really love this forum and have learned a great deal from everyone here. Lets make the days ahead merry and bright!

My New Year’s resolution this year will be the same one I have made for many years now, and that is to do my best to always remember what is most important at any time. It is easy to get caught up in so many things in life, worrying, stressing and trying to do too much. After my husband had a leg amputated, I realized that there were many times…[Read more]